Fun and a meaningful routine: the experience of physical activity in people with dementia.

BACKGROUND: Physical activity is important to health and wellbeing. People with dementia are less physically active than their cognitively healthy counterparts. Reasons for this are multifaceted, and are thought to be social, psychological, and physiological. People with dementia often use services such as home care, day care centres and nursing home, and according to the stage of disease they are less or more dependent on other people to take part in activities. To develop appropriate services to this patient group, their needs and preferences regarding physical activity must be recognized. The aim of the study was therefore to provide insight into experiences with physical activity in people with dementia. METHODS: The current study is part of a larger research project on needs in people with dementia. The main project included qualitative semi-structured interviews with 35 persons with dementia. 27 of the participants talked about their experience with physical activity. In the current study, the relevant findings on this theme were analysed separately. A phenomenological hermeneutic research design was applied. RESULTS: The analysis revealed three main categories regarding experiences with physical activity. To be physically active provided positive experiences such as feelings of mastering and post-exercise euphoria. To be physically active was meaningful. The daily walk was an important routine to many, and it gave meaningful content to the day. Keeping up with activities confirmed identity. Lastly, to be active was perceived as challenging. Participants described different barriers to being physically active such as a decline of physical function, lack of motivation and being dependent on others to go out. CONCLUSIONS: Many of the participants expressed that being physically active was important to them. It is essential that informal and formal carers are aware of the role physical activity plays in the lives of many people with dementia, so that appropriate measures can be taken to assure continued active living in order to preserve health and quality of life.

The experience of lived body as expressed by people with dementia: A systematic meta-synthesis.

INTRODUCTION: People with dementia undergo extensive bodily changes during the course of dementia. Even though this is largely unrecognised in the literature, these changes greatly impact on the persons' experiences of living with dementia. Consequently, health care professionals and family caregivers need to be aware of the implications this has for delivering care to people with dementia. Hence, a systematic review that synthesises the knowledge on this topic is called for. METHOD: This article presents a qualitative systematic meta-synthesis of interview studies with people with dementia. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Program criteria for qualitative studies were used to appraise the studies. Thirty-nine qualitative research studies were included in the review. The analysis followed the principles of interpretive synthesis. FINDINGS: When exploring people's experiences of their body when living with dementia, four categories emerge: (1) My body works; (2) My body betrays me; (3) Understanding and adapting to my body's changes; and (4) My body in relation to others. DISCUSSION/CONCLUSION: Every individual has their own personal experience of living with dementia; however, if health professionals fail to regard the body as more than an object, this may lead to the person's alienation both from the relation and from the body. The lived body experience has relational aspects as people with dementia are aware that others observe them, and they also observe others. Others' behaviour may affect the person's experience of body; one can perceive oneself as approved or denounced. People with dementia describe that a body that is capable and strong gives access to the world and to participation.

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis.

INTRODUCTION: For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia. METHOD: This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis. RESULTS: Four categories were revealed: (1) rooted in the past - "I am the same as before"; (2) focussing on the present - "Nobody has tomorrow"; (3) thinking about the future - "What is going to happen to me?"; and (4) changes in the experience of self over time - "I used to…." The latent overall meaning was expressed as "being engaged with the dimensions of time." DISCUSSION/CONCLUSION: The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.

I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway.

OBJECTIVE: Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers' assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services. METHODS: An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis. RESULTS: Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am. CONCLUSIONS: People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.

Balancing the struggle to live with dementia: a systematic meta-synthesis of coping.

BACKGROUND: People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia's experience of coping. METHODS: We conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses. RESULTS: This interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia. CONCLUSION: This meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.

Cortisol levels among older people with and without depression and dementia.

Cortisol dysregulation has been reported in dementia and depression. Cortisol levels and its associates were investigated among older people living at home and in nursing homes, in a cross-sectional study. A sample of 650 older people, from the community (home and nursing homes) and specialized care (memory clinics and old age psychiatry wards), mean age 76.8 (SD = 10.3) (dementia n = 319, depression, n = 154, dementia plus depression n = 53, and reference group n = 124), was included. Assessment included the Mini Mental State Examination (MMSE), Cornell scale for depression in dementia, activities of daily living scales, and salivary cortisol. Number of drugs was registered. The results showed that the cortisol ratio was highest among patients with dementia and co-morbid depression in comparison to those with either depression or dementia and the reference group. Characteristics significantly associated with cortisol levels were higher MMSE score (in patients with dementia and co-morbid depression), male gender (in people with dementia), and number of medications (in the reference group). We conclude that the cortisol ratio was highest among patients with dementia and co-morbid depression in comparison to those with either depression or dementia and the reference group. The association of cortisol level with MMSE score among patients with dementia and depression could further indicate that increased stress is related to cognitive function.

Associations between physical function and depression in nursing home residents with mild and moderate dementia: a cross-sectional study.

OBJECTIVES: The primary aim of this study is to describe depression and physical function in nursing home residents with dementia, as well as to examine the associations between depression and balance function, lower limb muscle strength, mobility and activities of daily living. The secondary aim is to examine the differences in physical function between the groups classified as depressed and not depressed. DESIGN: The study has a cross-sectional design. SETTING: A convenience sample of 18 nursing homes in, and around, Oslo, Norway, participated. PARTICIPANTS: We included 170 nursing home residents aged 60-100 years with mild or moderate degree of dementia defined by a score of 1 or 2 on the Clinical Dementia Rating Scale (CDR). OUTCOME MEASURES: Assessments used were Cornell Scale for Depression in Dementia (CSDD), Berg Balance Scale (BBS), 'the 6-metre walking test' (walking speed), 30 s Chair Stand Test (CST) and the Barthel Index (BI). RESULTS: Nursing home residents with dementia are a heterogeneous group in terms of physical function and depression. By applying the recommended cut-off of ≥8 on CSDD, 23.5% of the participants were classified as being depressed. The results revealed significant associations between higher scores on CSDD (indicating more symptoms of depression) and lower scores on BBS (95% CI -0.12 to -0.02, p=0.006), 30 s CST (95% CI -0.54 to -0.07, p=0.001) as well as maximum walking speed (95% CI -4.56 to -0.20, p=0.003) (indicating lower level of physical function). CONCLUSION: Better muscle strength, balance and higher walking speed were significantly associated with less depressive symptoms. The potential interaction of dementia with poor physical function and depression indicates an area to explore in future epidemiological studies with a prospective design. TRIAL REGISTRATION NUMBER: NCT02262104.

Long-term effects of a 12 weeks high-intensity functional exercise program on physical function and mental health in nursing home residents with dementia: a single blinded randomized controlled trial.

BACKGROUND: Research indicates that exercise can have a positive effect on both physical and mental health in nursing home patients with dementia, however the lasting effect is rarely studied. In a previously published article we investigated the immediate effect of a 12 weeks functional exercise program on physical function and mental health in nursing home residents with dementia. In this paper we studied the long-term effect of this exercise program. We explored the differences between the exercise and control group from baseline to 6 months follow-up and during the detraining period from month 3 to 6. METHODS: A single blind, randomized controlled trial was conducted and a total of 170 nursing home residents with dementia were included. The participants were randomly allocated to an intervention (n = 87) or a control group (n = 83). The intervention consisted of intensive strengthening and balance exercises in small groups twice a week for 12 weeks. The control condition was leisure activities. Thirty participants were lost between baseline and six-month follow-up. Linear mixed model analyses for repeated measurements were used to investigate the effect of exercise after detraining period. RESULTS: The exercise group improved their scores on Berg Balance Scale from baseline to 6 months follow-up by 2.7 points in average. The control group deteriorated in the same period and the difference between groups was statistically significant (p = 0.031). The exercise group also scored better on NPI agitation sub-score after 6 months (p = 0.045). CONCLUSION: The results demonstrate long-time positive effects of a high intensity functional exercise program on balance and indicate a positive effect on agitation, after an intervention period of 12 weeks followed by a detraining period of 12 weeks. Identifier at ClinicalTrials.gov: NCT02262104.

Inter-rater reliability of the Berg Balance Scale, 30†s chair stand test and 6†m walking test, and construct validity of the Berg Balance Scale in nursing home residents with mild-to-moderate dementia.

OBJECTIVE: When testing physical function, patients must be alert and have the capacity to understand and respond to instructions. Patients with dementia may have difficulties fulfilling these requirements and, therefore, the reliability of the measures may be compromised. We aimed to assess the inter-rater reliability between pairs of observers independently rating the participant in the Berg Balance Scale (BBS), 30 s chair stand test (CST) and 6 m walking test. We also wanted to investigate the internal consistency of the BBS. DESIGN: Cross-sectional study. SETTING: We included 33 nursing home patients with a mild-to-moderate degree of dementia and tested them once with two evaluators present. One evaluator gave instructions and both evaluators scored the patients' performance. Weighted κ, intraclass correlation coefficient (ICC) model 2.1 with 95% CIs and minimal detectable change (MDC) were used to measure inter-rater reliability. Cronbach's α was calculated to evaluate the internal consistency of the BBS sum score. RESULTS: The mean values of the BBS scored by the two evaluators were 38±13.7 and 38.0±13.8, respectively. Weighted κ scores for the BBS items varied from 0.83 to 1.0. ICC for the BBS's sum score was 0.99, and the MDC was 2.7% and 7%, respectively. The Cronbach's α of the BBS's sum score was 0.9. The ICC of the CST and 6 m walking test was 1 and 0.97, respectively. The MDC on the 6 m walking test was 0.08% and 15.2%, respectively. CONCLUSIONS: The results reveal an excellent relative inter-rater reliability of the BBS, CST and 6 m walking test as well as high internal consistency for the BBS in a population of nursing home residents with mild-to-moderate dementia. The absolute reliability was 2.7 on the BBS and 0.08 on the 6 m walking test.

Increased self-efficacy: the experience of high-intensity exercise of nursing home residents with dementia - a qualitative study.

BACKGROUND: There has been increasing interest in the use of non-pharmacological interventions, such as physical exercise, to improve the well-being of nursing home residents with dementia. For reasons regarding disease symptoms, persons with dementia might find it difficult to participate in exercise programs. Therefore, it is important to find ways to successfully promote regular exercise for patients in residential care. Several quantitative studies have established the positive effects of exercise on biopsychosocial factors, such as self-efficacy in older people; however, little is known regarding the qualitative aspects of participating in an exercise program among older people with dementia. From the perspective of residents, we explored the experiences of participating in a high-intensity functional exercise program among nursing home residents with dementia. METHODS: The participants were eight elderly people with mild-to-moderate dementia. We conducted semi-structured interviews one week after they had finished a 10-week supervised high-intensity exercise program. We analyzed the data using an inductive content analysis. RESULTS: Five overreaching and interrelated themes emerged from the interviews: "Pushing the limits," "Being invested in," "Relationships facilitate exercise participation," "Exercise revives the body, increases independence and improves self-esteem" and "Physical activity is a basic human necessity--use it or lose it!" The results were interpreted in light of Bandura's self-efficacy theory. The exercise program seemed to improve self-efficacy through several mechanisms. By being involved, "being invested in" and having something expected of them, the participants gained a sense of empowerment in their everyday lives. The importance of social influences related to the exercise instructor and the exercise group was accentuated by the participants. CONCLUSIONS: The nursing home residents had, for the most part, positive experiences with regard to participating in the exercise program. The program seemed to increase their self-efficacy through several mechanisms. The instructor competence emerged as an important facilitating factor. The participants emphasized the importance of physical activity in the nursing home.

Effect of a high-intensity exercise program on physical function and mental health in nursing home residents with dementia: an assessor blinded randomized controlled trial.

BACKGROUND: Dementia is among the leading causes of functional loss and disability in older adults. Research has demonstrated that nursing home patients without dementia can improve their function in activities of daily living, strength, balance and mental well being by physical exercise. The evidence on effect of physical exercise among nursing home patients with dementia is scarce and ambiguous. Thus, the primary objective of this study was to investigate the effect of a high intensity functional exercise program on the performance of balance in nursing home residents with dementia. The secondary objective was to examine the effect of this exercise on muscle strength, mobility, activities of daily living, quality of life and neuropsychiatric symptoms. DESIGN AND METHODS: This single blinded randomized controlled trial was conducted among 170 persons with dementia living in nursing homes. Mean age was 86.7 years (SD = 7.4) and 74% were women. The participants were randomly allocated to an intervention (n = 87) or a control group (n = 83). The intervention consisted of intensive strengthening and balance exercises in small groups twice a week for 12 weeks. The control condition was leisure activities. RESULTS: The intervention group improved the score on Bergs Balance Scale by 2.9 points, which was significantly more than the control group who improved by 1.2 points (p = 0.02). Having exercised 12 times or more was significantly associated with improved strength after intervention (p<0.05). The level of apathy was lower in the exercise group after the intervention, compared to the control group (p = 0.048). CONCLUSION: The results from our study indicate that a high intensity functional exercise program improved balance and muscle strength as well as reduced apathy in nursing home patients with dementia. TRIAL REGISTRATION: ClinicalTrials.gov NCT02262104.

Physical performance and quality of life of nursing-home residents with mild and moderate dementia.

INTRODUCTION: The aims of this study were to describe the quality of life (QoL) of nursing-home residents with dementia and their balance, mobility, muscle strength and daily life activity, as well as to examine the associations between QoL and levels of balance, mobility, muscle strength and daily life activity. METHODS: The study is cross sectional, and 170 nursing-home residents with dementia were included. TESTS: "The quality of life in late-stage dementia scale" (QUALID), Berg Balance Scale, comfortable walking speed, maximum walking speed, 30-s sit-to-stand, Barthel Index, Clinical Dementia Rating Scale, the Clock Drawing Test and the Mini-Mental State Examination (MMSE) were used. RESULTS: Our study showed that nursing-home residents with dementia are a heterogeneous group regarding registrations of QUALID and physical function measures. The scores on the QUALID ranged from 11 to 41 points. Higher scores on the 30-s sit-to-stand and Berg Balance Scale were associated with a better QUALID. For comfortable, as well as maximum, walking speed there was a trend towards better QUALID results for those participants with higher walking speed. CONCLUSIONS: Good muscle strength and balance were the most important physical performance variables significantly associated with a good QUALID score.